That’s Amy Harmon, whose Twitter profile says “New York Times reporter covering science & society.” In the ensuing twitter discussion, she added specifics, which will sound familiar to many members of SPM:

If non-scientists do?? I’ve sure heard numerous stories of patients trying to be heavily engaged in care for themselves or their families. Please do write to Amy.

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7 Comments

Michael Armstrong
on May 5, 2014 at 10:33 am

I like to read original sources for just about any scientific claims. Sites like The People’s Pharmacy are always reoprting on recent research, usually giving journal name and month, and it’s a chore to a) find the issue at all, and b) read the full-text article. Anything under the Elsevier banner is especially difficult. Often the abstract is available and sufficient, but if I really need the full article, I have access to many journals through a local university library, but I have to drive there. Articles from a conference proceedings are even tougher, because the citation is usually just something like “survey results presented on Wednesday at the National Proton Conference”, and the proceedings are seldom accessible.

This is a very common problem, especially with Elsevier and Wiley scientific reports.
My interests are with assisting patients with various types of cancer and getting the latest information on new drugs or treatments. Often the doctors are not up to speed and the patient has to do some research.
In my mind it is almost criminal that a cancer patient cannot get access to these new research reports.
There is a move towards Open Access, but it needs speeding up and the force of law to enable access for all.
Often the research is paid for by government funds, so why should a tax paying cancer patient have to pay again for something to save or prolong their life.??
A list of pay wall examples would be pages and pages long…!!

Reed Elsevier is the worst! sometimes you can get around it by going directly to the authors. Sometimes the journal editors will help. Sometimes you can find pre pub articles. It’s a crap shoot like a lot of things on the patient end of disease management

Dear All, I am a physician who used to access my literature through my job. I resigned from my institution after my daughter died there… so , among other things, I lost my medical library.

However, as I continue my academic research on patient safety and family-centered care (on my own so to speak), I go to the medical library as a community member. As a courtesy, they give me an internet password and I can access all the databases and e-journals.

So, I recommend to those who seeking access to try a medical school, a hospital’s library, or alumni connections to universities to access literature. You will be surprised how helpful librarians can be. Institutions often see this as good will extended to the community. If they don’t have such a policy, just ask. Good luck.

PS Note that when authors publish and want Open Access, they may have to pay up to several thousand dollars. I have published Open Access with authors in the UK and they have paid the fees, but US authors are unlikely to have such funding.

Every day I post links to new articles listed on PubMed about rheumatoid arthritis and sjogrens syndrome. When they are of particular interest to me, or very significant in their findings I try to get the full text of the article, only to be thwarted by Wiley and Reed Elsevier most often. OpenAthens and Eduserve kept me from other articles. Walters-Kluwer kept me from this article: http://www.ncbi.nlm.nih.gov/pubmed/23492974

As a patient I do not have access to journals and hospital librarians in patient libraries also do not have this access.

On occasion I have asked the authors for a copy with about a 50% success rate. Science should not be behind a pay wall. As Jack Andraka says knowledge wants to be democratic.. He found this out by trying to do scientific research and finding it very difficult to gain access to papers without paying.

Another issue is that frequently when you see the article you do not find out what you hoped to learn.

I am a family caregiver advocate and more and more is being written that is relevant to my concerns regarding family caregiver identification. Recently there have been quite a few articles in JAMA and other medical journals. I learn about them through listservs or friends/colleagues who know what I am interested in. They will often send me the links. I find researchers are the most helpful.